Because We Care!

Pair petition for people with developmental disabilities

Johanna Weidner

May 31, 2013

WATERLOO REGION — Subeer Bhandari and Cameron Dearlove don't have family affected by changes to support services funding for people with developmental disabilities, but the two friends felt compelled to do something.

The young men started an online petition urging the province for full, uninterrupted funding to ensure people get the support they need to pursue fulfilling lives involved in the community, and they're steadily gathering signatures toward their goal of 5,000.

"We want to see this issue talked about," Dearlove said.

Both are profoundly moved by the stories shared on the petition by families now faced with losing essential services, such as respite, indefinitely when a disabled child turns 18.

"They're really touching. They're very passionately worded," Dearlove said.

The Special Services at Home program, which covers support workers, respite care and recreational activities is no longer available beyond childhood and now families must apply to the Passport program for adults. And no funds are available until they finish school, although many with developmental disabilities stay until 21.

"Your diagnosis doesn't change. Your need doesn't change," Dearlove said.

When approved for Passport, the wait can be years to actually receive funding. Dearlove said Community Living Ontario reports there are about 4,000 on the wait list for Passport — and it's only growing.

"Cameron and I sat down and said something needs to be done," said Bhandari, 29.

He has worked with people with disabilities for years, including as a youth mentor, at a group home and in social work. Dearlove, 31, is co-ordinator of the Family Centre in Kitchener, which houses community organizations serving children and their families overseen by Family and Children's Services of Waterloo Region.

Parents they're hearing from are discouraged by the changes, which only add to their exhaustion coping with daily life.

"They didn't have it in them at the end of the day to engage in activism," Dearlove said.

Sue Simpson knows that strain on families all too well, both through her work at Waterloo Region Family Network and as a mother of a grown son with significant physical and medical needs.

The network supports more than 455 families with children and young adults who have special needs, educating and connecting them to needed support — and many are very concerned about the funding changes that only add to the fragmenting of care when a disabled child turns 18.

"It was the one thing that was constant," said Simpson, director of programs and operations. "Now it's one more step, as well as the fact of losing funding for some time."

The financial burden on family can be huge — even with government support.

Simpson said she and her husband Mike pay almost $20,000 of the $50,000 annual cost for their son Kevin's personal support and activities — "just to help him enjoy everyday life."

Luckily, he was grandfathered into the Special Services at Home program and there was no stoppage of those services, but he was on the Passport wait list for a year to get the one-on-one support that's essential for him to enjoy activities, such as visits to the library and park or going swimming.

Kevin has cerebral palsy, profound developmental delay, epilepsy, significant respiratory issues and is non-verbal, requiring around-the-clock care by someone with special training.

The Simpsons are now selling their home to deal with their debt from these significant costs, and she said they're not the only ones. Some parents may have to give up work to stay home to care for their children while waiting for Passport funding or go into debt, not to mention the strain of losing respite care that gives everyone a much-needed break.

"It's necessary for the entire family," she said

For the person with the disability, it comes down to quality of life.

"The opportunity to choose to live a healthy and active lifestyle in the community is important," Simpson said. "All those opportunities now are on hold because most families can't afford that."

She is amazed by Dearlove and Bhandari taking up the cause when they don't have family members affected: "Caring about other community members and that's what it boils down to."

They all want to see seamless funding to ensure there's no wait between children and adult services and no wait after finishing school.

"It's really important to be able to live a happy and engaged life and, for most of us, the only way to do that is with this funding," Simpson said.